Being a caregiver of a Behçet’s syndrome patient: challenges and perspectives during a complex journey

Abstract

Background As often seen in many chronic diseases, the disease impact on patients also induces a significant impact on the quality of life (QoL) of caregivers. Caregivers are the ones who are really willing to offer care in the general approach of many aspects of the disease, including the awareness of the diseases itself, the daily management of therapy, and all the potential challenges that living with a chronic disease can include. The main objectives of the study were to explore the perspectives and views of caregivers of Behçet’s syndrome (BS) patients, to study their level of awareness on the disease and the impact that BS may have on their lives by means of a survey co-designed with caregivers and patients with this purpose. A survey was entirely co-designed with a panel of caregivers of patients living with BS patients. Results Results show that BS caregivers organise their life according to the needs of the patient, that they (79%) considered themselves as helpful for the patient and 53% of them replied that they can freely express their emotions. Notably, 70% and 68% of the respondents reported they renounced with a variable frequency to sexual relationships due to concerns regarding the health of the partner or to the partner’s illness, respectively. The majority (79%) of respondents indicated that they are familiar with the treatment taken by the patients and that 68% deal with the administration of some medicines. In terms of awareness, a good percentage (64%) of respondents reported to understand the illness and, in terms of education, 68% of participants are willing to take part in training programmes dedicated to BS. Conclusions The results of this survey contribute to provide new information on BS caregivers and on their important role, and to identify areas in which new initiatives could provide BS caregivers (and therefore patients) with tools and knowledge that can empower them in reducing the burden of the disease on their lives, on families, and on the patient.

Exploring disease perception in Behçet’s syndrome: combining a quantitative and a qualitative study based on a narrative medicine approach

“…Despite telling their individual story, patients often addressed common issues, such as the long and complex journey faced from the disease onset until the BS diagnosis is formulated, which was strongly connected to the concept of time and perceived as an exhausting period of their lives. Data from the literature described how delays in BS is a well-known issue [17][18][19][20][21] and this can be aligned to the fact that many stories described in great detail the different milestones of the period lived before the diagnosis, including specificities on the hospitals visited and on the clinicians consulted. A strong focus on emotions and feelings permitted to enter the complexity of living with BS.…”

Frail Silk: Is the Hughes-Stovin Syndrome a Behçet Syndrome Subtype with Aneurysm-Involved Gene Variants?

“…Managing BS and its specific variants is complex and challenging [ 134 ]. In patients with BS, a hemorrhage should inspire a suspicion of HSS [ 129 ].…”

Assessing quality of life in Behçet's disease: a systematic review

“…On this regard, it is crucial that patients and caregivers are actively involved in the process of implementation of existing tools thanks to an appropriate co-design approach ensuring that all the dimensions that have an impact on their life are measured and quantified. In this regard, the role of caregivers and their QoL should also be considered, considering also the burden caused by BD on their life and promoting their participation in the codesign process of QoL tools (71,72).…”